What would you do?

When I entered Little Man's school yesterday a teacher's voice stopped me in my tracks. She wasn't quite shouting but her voice was raised. Raised in unmistakable anger.  

"You look at me. Look me in the eyes, say you are sorry and mean it. I said look at my eyes when you say it."

Her voice hurt me. Let's leave the words aside for a minute, just the tone of her voice knotted my stomach. My jaw clenched and my whole body braced for a blow. I've heard that tone voice before as a child myself and all these long years later it still hits me as hard as any physical slap. She was not talking to my Little Man and years of being judged and second guessed as the mom of a special needs child makes me reluctant to step into any adult child interaction I don't know the background and context of but here it is hours later and I can't get that interaction out of my head. 

Perhaps it is because as much as I hate to admit it, I've heard that same tone come from my own mouth. It leaves me floundering in an ocean of shame when it happens and thankfully it is rare. But it should be never because that tone never taught me anything true or of value. It has no place in a child's life. It's the voice of hate. I do not mean to say that teacher, or I, hate any child. That voice comes out in me when I am so beyond tired, or frustrated, or afraid, that I hate the situation I am in, the way that I feel, sometimes even myself in that moment. 

But a child doesn't know that. They only know what they hear and feel. That voice takes up residence in their heart and mind just waiting for its chance to leak out through their self-control and contaminate the next generation. I don't know how you purge that poison. I do know slowing down, taking my time, being more intentional and less reactive with my kids is what helps me keep it under control. But there are still those moments when stress has ground my nerves as raw as hamburger and I feel it bubbling up my throat. I've gotten better about giving myself a time out before it erupts but I think that will always be a struggle.  I assume for the teacher I heard, she had reached that same place where her control and restraint simply wore too thin. Right now I'm wondering, was there some way I could have helped in that moment at school. Was there a way to helpfully intervene or was letting it pass really the only way to not make a bad moment worse. 

If the emotion had not already been so high, I would have said something about her words at least. Not every child CAN " look you in the eye." And under emotional stress, a flat affect or even a smirking mask may be the best any child can produce. I don't know if the little boy involved in this incident has any neuro cognitive or developmental issues. He may very well not but I do know that exact scenario plays out for children who do have those issues all the time. 

I think that is why it's still troubling me. It had nothing to do with Little Man today, but some day it will. Did I wimp out on an opportunity to educate? Can someone that worked up be reached in the heat of the moment? What should I have done? Is there something I should do now after the fact? I still don't know. 

What would you do? 

Reaching Out

Hey guys I need a hand.

I’m struggling my way through finding a new way to see FASD.  To appreciate its gifts as well as see its challenges.  For me words are the way I shape my thoughts.  So I've been trying to be more careful with my words.  There is one thing I keep stumbling over – and I’d like you to help me shape it define it – name it.   I’ve noticed that among the community of folks with FASD they use the term “Neruo Typical”  (or NT for short) to describe what neuro-typical’s like to label “NORMAL”.  I really like this – I've adopted that as my new term.  It doesn't carry the same baggage for me as “normal”. 

What I am struggling with now though is what is the opposite term?  What is the right term for “Not Neruo Typical?”  I mean is it just that – not neruo typical?  I’m searching for a word that indicates a difference without heaping a judgment of good or bad on the difference and I’m coming up blank.  I think we need this for making a paradigm shift.  I KNOW I need it.  So I figured I ‘d ask for help.  And I am ashamed to admit the first place I was going to as was other parents of kids with FASD.   That’s right other NTs.  And I realized I still have a lot of work to do on myself in terms of being ready for this future I imagine, one where people with neuro cognitive differences are recognized as equally valid, different but not less than neruo typical. 

I know all this angst over the distinction in words may seem picky or even silly to some people.  But I’d ask you to think about the difference between calling someone an “Indian” verses a  “Native American” verses a  Sioux.  One was a wrong (Columbus never made in anywhere close to India) label ( and I'd argue applied with clear derogatory intent), one was intended to be neutral but still externally applied, and the last is the name a people gave themselves.

So I’m asking people affected- how do you define this –what words do you use? What words should we all be using?   I see affected people connecting – forming your own communities in person and on line.  You should have a voice that is heard and respected.  Hello, my name is Tina.  I’m neuro typical.  And you are?

Everything does not have to be a fight

I was reading comments on this article about Autism and people were getting into a tizzy regarding comments about the misdiagnosis of children with FASD as autistic.   

I really don't understand why.  Autism Spectrum Disorder (ASD) and Fetal Alcohol Spectrum Disorder (FASD) are similar in several symptoms and may be mistaken for one another.  They are not, however, the same.  In general, it is more socially acceptable to diagnose ASD than FASD because there is no definitive known cause for ASD and therefore doctors can avoid the blame / shame problem associated with FASD.  The problem with this is that while some treatment protocols / therapies for ASD are helpful to children with FASD, many are not.  So misdiagnosing leads to less than optimal treatment of children who have FASD and inclusion of FASD children in studies of treatments to help ASD cloud the results.  We need to remove the stigma from FASD so that children with each disorder may be properly diagnosed and treated in ways that maximize their potential.  

The comment that some children diagnosed with ASD really have FASD (or perhaps have BOTH) is not aimed at dismissing the seriousness of ASD in our country today.  Nor does it deny the importance of ASD research and treatment. 

The same problems happens with ADHD (attention deficit hyperactivity disorder), ODD (oppositional defiant disorder), SPD (sensory processing disorder) and a whole host of others.  Children with FASD may exhibit symptoms that look like any one of these.  Again - that does not dismiss those disorders nor minimize their prevelance.  But misdiagnosing children with any of these leads to less than optimal help for the children and contaminates study results on the effectiveness for treatments for the disorder while preventing an opportunity for study of effective treatment for FASD.

Unless I am missing something the only controversy here is people getting offended that you might be saying their child's problems were caused by their behavior.  Um - doesn't that kind of prove my point?  Until we remove the blame and stigma from an FASD diagnosis people are going to try and avoid that "label" and slap on a more socially acceptable, but incorrect, one.

How Alcohol Effects Neural Development - continued

I usually do a little more than just the first two visuals and associated points - if I can keep them focused.  Specifically, 

A lot of people seem set against accepting FASD.  It really bewilders me.  I mean some of them have personal reasons I'm sure - not wanting to accept that they or someone they know may have been impacted by prenatal exposure, their own or someone else's struggles with alcohol addiction, but some just seem set against it for no reason at all.  Why is it so hard for some people to accept that FASD does exist?  Theres a question of the week (month, year, life) for you.  Does anyone else see this persistent denial?  Do you understand it?  If so, can you explain it to me?

Does this count as a "Guest Post"?

Today's post is blatant plagiarism.  Wait, is it still plagiarism if you acknowledge the author and get their permission?  I guess not.  Adrienne is the one that found this article and noticed the connection.  She said everything perfectly in her comments so I don’t really need to do more than just share what she wrote:

·         "Meanwhile, parents are often wracked by guilt, wondering what they did (or didn't) do that caused their child's _____.... In such an environment, it's no wonder that our research into __________is designed to prevent it.

I stand with a group of ________adults and their allies who believe that the best way to support _________people is to accept them, encourage their strengths, and work with them to find ways to mitigate their disabilities. And I don't see how I can support acceptance and also support research that seeks prevention."

This quote is from an article about autism and the constant search to find a cure. If you take out AUTISM and add in FASD to the blanks, you will see exactly where FASD awareness and prevention efforts are focused right now, and why I think it's time to move forward from there.

The only known effective "treatment" for FASD is parent and caregiver training and support, where caregivers are educated that this is a brain-based, permanent disability that impacts behavior. And by accommodating people with FASD and changing their environments so they are best set up for success we can help them develop at their own pace. ~Adrienne Bashista

Here's the link to the article, in case you're interested: http://www.huffingtonpost.com/todd-drezner/autism-research_b_1838150.html

Good Idea or Absolutely Horrific?

A New Question of the Week for folks. 

I’m reading this book  Shut Up About Your Perfect Kids A Survival Guide for Ordinary Parents of Special Children by Gina Gallagher and Patricia Konjoian.  Because obsessively reading about FASD and special needs is what I do now.  My husband is hoping it’s a stage.   I’m only about 30% of the way through the book and so far I have mixed reactions.  First I have to say their take on how perfection obsessed our world is today is spot on and I love the idea behind their “Movement of Imperfection.”  The writing itself for some reason doesn’t snag me the way the Easy to Love but Hard to Raise did but that’s just style difference.  The content has been really good. 

Then I got to this idea – making up business style cards to hand out to people in the general public that seem or overtly act annoyed by your child’s disability.  The text on the card recommended specifically cites Autism but the idea is you can make your own for any disability.  This is where my “Hell yeah!”  /”No way in hell!” dichotomy kicked in.  I have not figured out how to resolve it after over a day of pondering.

On the one hand, I like the idea of setting the person straight in a low key way, which I’m unlikely to be able to do by speaking to them.  It’s a whole lot more likely I’ll end up arrested for assault if their judgmental attitude has hurt my kid in some way.   And I really do believe low key has a much better chance of actually increasing tolerance of difference than ” in your face” does.   Somehow once my child is personally affected though – the idea of education and promoting tolerance goes out the window and a female version of the Hulk comes to wreak vengeance a thousand fold for each tear.  I strongly believe that educating the public about FASD is VERY important.  (I could go off on a whole separate rant here about how absolutely criminal it is how little is known about FASD but I’m going to restrain myself and try to stay on point.  I think my daughter’s ADHD may be contagious!)  So a card that could be passed off as we hustle away before the “Don’t make me angry.  You won’t like me when I’m angry” transformation begins is a neat idea.

On the other hand – Isn’t that kind of like placing a large neon flashing sign over your kid’s head?  I don’t want Little Man known only as his disability.  He is so much more than that.  As he gets older wouldn’t my doing something like that make him feel even more self-conscious and “different” (different in the weird way not the ”cool, I’m a unique individual” way).  It also feels like it could come across as – I don’t know – kind of self-righteous and snotty which also would not foster much tolerance I am thinking.

I’m wondering what other people think.  Would you hand out a card like that about your special needs child?  How would you receive the message if someone gave you one?

Question of the Week

I saw this “Question of the Week” **posted on line:

1.     Question of the week: if you could ask your child’s school principal or district superintendent to do 3 things that would improve the life of your child (or others) with LD, what would they be?

And I just had to answer:

#1  Please cut down on the amount of crap you hang on the walls, ceiling, doors and windows of the class room.  This is a really simple absolutely no cost change.  I feel assaulted by all of the stimuli - I have no idea how kids with sensory problems cope.   Research has shown that a lot of children with LD have issues with this, especially kids with ADHD so its not like I’m asking you to do it just for my kid’s sake.

#2  Stop trying to tell parents "We just don't do that here." whenever we ask for an accomodation our child needs for their disability.  You know it’s a budget issue, I know it’s a budget issue, and we both know that regardless of the money problem  if its required by IDEA, Title 5, or ADA you are going to have to do it eventually anyway so stop wasting my time with 40 million meetings when we all know the outcome.  If you let us spend that energy lobbying to get you more funds you'd be better off in the long run and so would the kids.

#3  contrary to popular opinion women do not lose all brain function when they became a mom.  I have a freaken Master’s degree IN EDUCATION - stop telling me how you guys are the experts and I just have to rely on your judgment and LISTEN to me.  I am the expert in my child’s particular pattern of learning challenges.  When you produce someone with a degree and experience in teaching post institutionalized, internationally adopted children with FASD and sensory integration issues then you can tell me you have the expert. 

In fact, stop doing this to all parents regardless of their education level or age or gender - they live with the child 24/7.  They are the expert in their child.

What would your suggestions be?

** this question of the week was originally posted by Adrienne Ehlert Bashista co-editor of Easy to Love but Hard to Raise.  You can find her on facebook at https://www.facebook.com/#!/easytolovekids and on line at http://easytolovebut.com or http://asquarepegaroundhole.com

I follow all three.  The help, ideas and support there are fantastic.